Summer fun 2015:

So an update on Emily since we came back from Nebraska last weekend.  We asked the Dr's to make a change in her tube feeds in effort to give her a more normal night time for her age.  She is now getting 4 bolus feeds (higher rate of fluids pushed in shorter time frame) and from 4 pm until 7:30 pm she gets the rest of her milk at the lower, slower rate.  Plus 2 of the 5 cans of formula she gets each day, she is taking orally (meaning less having to be pushed thru the tube).  The result so far is that she has only had one night where her underpad on her bed was wet and she has had 2 completely dry nights (both bed and pull up).  Celebrating big time on those mornings.  I don't think she ever thought she would be able to wake up dry but it sure is great to see how happy she gets when she does.

So another yearly check up with Nebraska has come and gone. Everyone was surprised at how big Emily has gotten over the past year.  She is doing well.  We had the chance to see her plaque in the Pediatric wing and to have lunch and a couple of dinners with a few different friends.  Emily's favorite  part of the trip was seeing her BFF Danny.they had a chance to play on Wednesday, Thursday and Friday.  We also saw one of her transplant sisters, Emerson.  Overall we had a great trip and we don't have to return for anot her year as long as things continue to go well.